On May 11, 2018, I was the passenger in a vehicle we were using to conduct patrol. During a routine traffic stop, a suspect bailed out of the passenger side of vehicle armed with a handgun. As I excited my vehicle to pursue the suspect, I took two footsteps and saw a headlight. I put out my left arm in fear at which time I was struck by a truck.
I was able to gain my balance, continue to pursue the suspect, place him into custody, and retrieve the handgun.
I was sent to shock trauma and six months later, October 2018, I was diagnosed with Complex Regional Pain Syndrome Type 1.
What has daily life been like since your diagnosis?
It has been such an obstacle, but the key to being a strong Warrior is the mind. If you can control your mind, you can control how you react to the battle of CRPS. I have since had two spinal blocks and a Spinal Cord Stimulator placed inside of me to include a cervical wire. I have had to change so much from become a healthy detective to a person struggling to walk and complete normal activities.
What is one thing you wish those without CRPS/RSD could understand?
That sometimes I do not have the energy to be who I used to be. That I am now a new person who has accepted who I am and I will not always be able to make every function. That sometimes I need alone time to gather my thoughts and emotions and that there are moments where I may feel like a burden. I wish I could be who I used to be, but unfortunately that is not an option. I am going to be better than I used to be… while battling CRPS.
What advice would you give to newly diagnosed Warriors?
Find something that comforts you. I started sewing two months after my diagnosis which has led me to become a fashion designer. When I sew, it is almost as if I feel no pain. It is a positive distraction that gives me hope as I hope to spread awareness with every design I complete.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Continue pushing, continue fighting. You have made it this far and for that I am proud of you. You are truly inspiring to others who are fighting.
I would love to know what activities or treatments have helped you find temporary or long term relief?
As I stated, I enjoy sewing. It is a craft that allows me to use my limbs more and stay active. Honestly, the amount of concentration it takes to assure that I do my project correctly is an amazing temporary distraction.
Anything else you would like to add?
If you would like to learn more about sewing, need mental encouragement on days when times are rough, or would like more information on the clothing brand I am creating to raise awareness for CRPS, feel free to contact me on Instagram at @MackTheTailor or via email.
I turned 50 in January 2019. Fifty was supposed to be my year. I even did the SNL Sally O’Malley skit as a joke on my birthday. You know the one: “I like to kick & stretch & kick! I’m 50! Fifty years old!”
I set big goals for myself that year. The biggest one was to run the slalom waterski course which is very challenging. I trained and practiced so hard even though I had a broken toe! I just taped it up and got to it. My pain threshold was very high. My husband and I would drive eight hours to Orlando five times in one year so that I could train with a world champion coach. Why did I have this goal? Because I loved to slalom ski and loved the challenge. Shortly after my birthday, I spent two weeks windsurfing every day (yes with the broken toe taped up good) and going barefoot. By the time we returned home I could hardly walk. I scheduled my surgery and my life changed forever.
How and when did you develop CRPS/RSD?
In March 2019 I had surgery to repair my left foot. It involved removing a bone fragment at the metatarsal joint of my second toe, rebuilding and reattaching the ligament that tore when I broke the toe, doing a bone graft to fill the joint space to make it more stable and excision of a nerve that I had crushed. I knew something was wrong when I had so much burning pain and pressure in my cast. I could see that my toes were black & blue. The PA in charge of my post-surgical care was not concerned. I did not know what was normal since I had never experienced a major surgery before. By the time I was diagnosed two months after surgery, my lymphatic system was not working correctly, and I had lymphedema from my foot to the bottom of my shoulder blade on my left side.
What has daily life been like since your diagnosis?
Challenging with highs and lows. I spend a good portion of my day managing this disease so that I can live life on my terms. If I do something big like prepare for and host a dinner party, I know that I will suffer severely for a week following the event. Everyday I complete exercises like rebounding, calf raises, and desensitizing to help me throughout the day. I also do one on one restorative yoga twice a week and a Pilates reformer class twice a week. My OT does manual lymphatic drainage and myofascial release on my left lower quadrant twice a week. I have done many other therapies that have helped including chiropractic with Burleson Chiropractic and laser and hyperbaric oxygen therapy.
The only prescription I take is Cymbalta for neuropathy. I take vitamin C, magnesium and alpha-lipoic acid. I am working on improving my eating habits by avoiding inflammatory foods and loading up on anti-inflammatory ones. I had my first major setback a few weeks ago when I developed an ulcer in my mouth. My dentist chemically cauterized the ulcer and prescribed magic mouthwash to numb the area. By evening I was in more pain than I ever believed possible. I took hydrocodone for two weeks and that barely touched the pain. Neither my dentist nor the oral surgeon he sent me to understood the level of pain relative to the problem. Luckily my nervous system is starting to calm down.
What is one thing you wish those without CRPS/RSD could understand?
That even though I look physically fine and I am back to windsurfing and wakeboarding I still struggle every day with pain and swelling. That even though I do not always look swollen my nervous system still tells me that I am. That many days I feel like my hands and feet are inflated surgical gloves and that my fingers and toes want to shoot off like rockets. That most days it feels like I am standing on rocks or relief when it is only feeling like bunched up socks.
What advice would you give to newly diagnosed Warriors?
Find a physical therapist and an occupational therapist that understand how to help you. This has saved my life. I could not walk for three months after surgery. It took two months for me to be diagnosed because my post-surgical care was with the surgeon’s PA who did not take my concerns seriously. He said I was claustrophobic when I described the burning pain that felt like my cast was cutting through my leg. At my two month follow up, when I should have already been walking, I could see the concern on my surgeon’s face when he diagnosed me. He said get a good PT & OT close to home immediately. That was at the beginning of May 2019. Once I began PT, I started walking within a month. I was finally released from PT when they could no longer challenge me with what I could do physically. I started OT at the same time and still get treatment twice a week 10 months later and will continue for the foreseeable future.
I could not be as positive as I am today without stress management therapy. I found someone who is non-judgmental and compassionate to pour my heart out, cry, and laugh with. It helped that she is not personally invested in me. She was a stranger when I met her. She helped me set goals and meet them when I felt like I had zero control of my life. Due to my therapists and my perseverance I got my life back and felt sane again. After several months, my husband said Sandy was back. I could finally laugh again and focus on things besides my condition.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Since I know it manifests differently in everyone, I do not judge anyone’s journey, but I do know that for me movement is the key to my successful management of this disease. Every day I push through the pain and swelling. I do whatever it takes each day to make it ease up even though I know it is temporary and I will have to get up the next day and the next to do it all over again. Try every therapy within your reach and do not give up!
I was in a bad car accident in 1977, the year I graduated from high school. The following year, I had surgery on both of my feet. It was a bunionectomy on each foot. I was 19 and my doctor said I had the feet of a 40-year-old. I was admitted to the hospital and released in a few days. That was the beginning of my nightmare. It took me a very long time to heal from that surgery. It was a good year before I could even bend my big toes.
I had tremendous pain by the end of each day after work. No matter what type of shoes I wore, my feet were always in pain! Over the next several years, I felt so unhealthy. All my bloodwork came back fine, but I was always having pain. Over the next several years, I was tested for Lyme disease and Multiple sclerosis. I was falsely diagnosed with MS and put on some pretty harsh drugs. About 20 yrs ago, my toes started getting numb and tingling. I was then diagnosed with neuropathy, inflammatory arthritis, and Raynaud’s disease all in my feet and moving up my legs. Once my new podiatrist saw my feet, she said, “Wow! THAT IS CRPS!”
I had heard that acronym once before from a neuro spine surgeon when I told him of all my symptoms, but since that was the first and only time, I forgot about it until I heard it from my podiatrist. When I got home, I looked it up on Google. I was a textbook case. Why did it take 40 grueling years to get a correct diagnosis?
What has daily life been like since your diagnosis?
I suffer so much every day. I have not slept through the night for over a year. My feet throb with nerve pain and it is difficult to walk. During the night, my feet burn like fire. It hurts to rub lotion on them or wrap them in cold towels. My pain doctors have not helped, but made my journey worse because I get such anxiety when the sun goes down because I know another long night awaits me.
What is one thing you wish those without CRPS/RSD could understand?
Just because I get up and get dressed and put my makeup on, does not mean that I can keep up with all of my family and friends. My house will never be tidy again. I am no longer a gourmet cook and there are no more long hikes with my husband.
What advice would you give to newly diagnosed Warriors?
One hour at a time, one day at a time. Look for a support group to help you!
What advice would you give to Warriors who have had CRPS/RSD for many years?
It has been a humiliating and excruciatingly long 40 years. Doctors have diagnosed me with so many things such as fibromyalgia and MS. I definitely have overactive nerves and I look at my pain as a sort of prayer because I find it difficult to concentrate on prayer. Reach out to newly diagnosed patients to give them hope.
What activities or treatments have helped you find temporary or long term relief?
I am waiting for a pre-authorization from my insurance company for a sympathetic nerve block. I have had so many in the past, but this is supposed to be different. If this does not work, I will have a Spinal Stimulator put in.
Anything else you would like to add?
I just wish more doctors would be educated on this disease. The years and years of the unknown has taken such a toll on me and my family.
I had an epidural injection for a herniated disc that I had a reaction to. It was my third injection and it hurt pretty bad when the pain doctor did it. It was unlike the others I had. I cried when the doctor stuck me. I could feel him pushing on my lower back. 24 hours after the injection I could not move my head from side to side. I could not bend slightly and I had to have help walking. I could not lift my right leg or put my sock on my foot. It took almost a year for me to get diagnosed.
I was told that there was nothing wrong with me and that it was just the herniated disc but they could not do surgery because it was not pressing on my nerve enough to deem surgery. I was told I had bursitis and they gave me a Cortisone shot for it. That shot only made me feel worse and walking worse. At that time I did not know I had RDS/CRPS. I was told I had elephant leg when my right leg and foot were swollen and red/purple in color. The doctor who told me I had elephant leg said it was caused from me having a hysterectomy in 2015. I looked him straight in the face and told him he was crazy and got up and walked out of his office. I made one appointment with the pain doctor to see what else could be done. We talked about what was going on and my symptoms and that was when he diagnosed me with CRPS. That was in February 2018.
What has daily life been like since your diagnosis?
My CRPS, which started in my lower back and right leg, has now spread to about 90% of my body. Therefore, daily life is a struggle. I have full body spasms. The spasms wake me up at night. I lose my balance just walking. I am always dizzy. I wish I was able to get up and go to work like I used to. I stay tired all the time. I am not able to stand more than just a few minutes. I have trouble eating and holding a fork or spoon. My appetite has changed because of having CRPS in my stomach and intestines.
What is one thing you wish those without CRPS/RSD could understand?
Everything about the syndrome. Please research and learn everything you can. Ask questions about this disease.
What advice would you give to newly diagnosed Warriors?
Keep a diary and take pictures of your flare ups to show your doctor. Do not be afraid to communicate and ask questions with your doctor. Be your own advocate because no one else will.
What activities or treatments have helped you find temporary or long term relief?
With me, it seems the more active I am the more it hurts me. I cannot walk long distances and now it is getting to where even walking a short distance hurts me. I have a Spinal Cord Stimulator, but it is not giving me the relief that I was hoping for. My right leg still has unbearable pain and spasms about 75-90% of the time when I do something. I cannot even drive because of it. I have to sometimes lie on my left side and that does not always help. And even muscle relaxers and nerve pain medications are not 100% effective.
Anything else you would like to add?
If you have a support system, no matter how big or how small, as my husband tells me, take that circle and roll. I have lost family because of this disease. They do not understand it. They do not want to take the time to understand and support me being sick, and I do not want that. I want people in my life that can accept the fact that I have a disease that there is no cure for and I need their support. I told them if the shoe was on the other foot, I would support and advocate for them. All I got back was grief and negativity.
Rare Disease Day is held annually on the last day of February to raise awareness of rare diseases. This year, Rare Disease Day is Saturday, February 29th, 2020, but RSDSA is working to spread awareness for CRPS all week long.
Check out our daily virtual activities and join us if you can!
Monday: Make your voice heard: Share your CRPS journey photos on social media by using the hashtag #RSDSArare. We want to make sure that those without CRPS understand what CRPS is and what it looks like.
Tuesday: Write and/or visit your local and state representatives to educate them about CRPS. Check out this sample letter that you can share.
Wednesday: Join the #SpoonieChat on Twitter at 8p ET to connect with other rare disease warriors. #SpoonieChat was created by Dawn M. Gibson in 2013 for Rheum patients. It has now become a weekly chat for chronic pain patients.
Thursday: Each one, teach one: Share advice for new chronically ill patients and use the hashtag #RSDSArare.
Friday: Connect with another rare disease warrior online or in your community.
Saturday: If you are in the South Haven, MI area, join us for Leap For A Cure at American Legion #49 at 6p.
For 25 years I had a shoulder issue that doctors diagnosed as Thoracic Outlet Syndrome. I tried very hard to work with that and just let it go, but the pain increased over the years. So when a vascular surgeon told me it could be corrected with surgery, I was all for it. Of course he did not warn me about the consequences of such surgery, namely CRPS.
He removed the first rib, the anterior and middle scalene muscles, and low and behold, found my brachial plexus bundle was twisted. Normally it has nerves on one side, artery on the other, vein on top. Mine was twisted so the nerves all sat at the top, so when he removed the anterior and middle scalene muscles, he basically removed all the protection the nerves had, and from there, scar tissue was formed which rubs continuously against those exposed nerves. This created injury to most of the nerves that radiate from the brachial from the neck on down to the fingertips, with the nerves to the clavicle involved as well.
When I went back to him in severe pain, he decided releasing the pectoralis minor muscle in two places would relieve the pressure on the ulnar nerve. This just gave me more scar tissue to rub against the ulnar nerve constantly as well. This happened in December of 2008 and February of 2009. The pain has been progressive ever since. And of course, the doctor left his practice here and moved out of state so he could not be found.
What has daily life been like since your diagnosis?
I finally had to give in and go on disability in 2014. My life has been a regimen of pain medications and pain. My house has fallen apart because I cannot clean like I used to. Travel has become difficult due to the pressure on an airplane. Driving has become increasingly difficult since I drive more with my right hand than my left, and my right side, from neck to fingertips, has become fairly useless, movement of any kind causing excruciating pain so anything I do is limited in scope.
What is one thing you wish those without CRPS/RSD could understand?
I am not pretending. You may not be able to see it (unless you are in my company for a long time and can watch as my tough guy exterior crumbles), but it is very real, very debilitating, and not something I can do anything about. I try to give people a little taste of what I am feeling by having them press that indentation between your neck and your clavicle, press hard, and they will hit the brachial plexus and get a zing from it. Multiply that zing by a thousand, and maybe you can almost know. But either be understanding and help me out now and again, or go away, because it is hard enough to deal with pain all the time without having to also deal with the prejudices of people who do not suffer this kind of pain. Do not look at me like I am a heroin addict when you notice the amount of pain medications I am on. I wish I could get high from them, but they barely even touch the pain. So, do not be so judgmental.
What advice would you give to newly diagnosed Warriors?
If the injury is new, do the physical therapy. There are methods out there to help reduce some of the pain. And if the injury is new, it is possible to build up the muscles that protect the area so you can minimize the pain… at least for awhile. And find a good pain clinic. These days pain management doctors are terrified to give out medications that actually make a difference, so try to find one that specializes in injury and CRPS. Look out for the ones that specialize in Fibromyalgia. They tend to not take you seriously and they do not recognize the difference between the two disorders.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Find something you love to do that does not cause you too much pain and takes up hours in the day so you can enjoy life. I found that I am a pretty darn good developmental and line editor for fiction, particularly Fantasy/Urban Fantasy and PNR books. I have many authors that use my abilities and I am loving every minute of it. Particularly when a book comes out that I worked on that gets great reviews. It is a new love in the business world. I am creating a small business that I will make a minimal amount of money doing, and I will be loving every minute of it. That is what you need to do to take your mind off the pain. And use Voltaren! It is a lifesaver when the muscles get so tight they cause extra pain by pressing on the nerves.
What activities or treatments have helped you find temporary or long term relief?
Again, Voltaren. I will scream that gel from the rooftops if I could just to get pain sufferers to try it. Activities, well, outside of a hobby you like that will not kill you with the pain is great, and I read, incessantly. Non-stop. Takes my mind way far away from my own issues.
Anything else you would like to add?
Living with constant nine on a 1-10 scale pain is hard enough. The government interfering with the pain medicine regimen I have been on for over 20 years (some from the 10 before the surgeries, some from the 11 since the surgeries) just makes things worse. The fear is overwhelming that my doctors will start being forced to follow the ridiculous reductions of opioids that the DEA is pushing on the pharmas that distribute them. They should just be working on the street drugs that are causing all this insanity.
I am terrified of the amount of suicides that will follow any serious reduction in availability and restrictions on distributing prescriptions. People in serious chronic pain will see no alternative but to end the pain in the only way available to them: suicide. I am just trying to stay strong and hope my doctors (who are wonderful, by the way) will never completely bow down to the horrid restrictions that the government is attempting to impose on the doctors. Because, without my meds, I do not know what I would do. I know getting out of bed would be more than I could handle. Sidebar: I cannot sleep in a bed anymore, which means I no longer sleep with my husband. I have to sleep on a recliner, and even that is beginning to cause serious issues. I only sleep an hour or two tops at a time, which means I am sleep deprived all the time. That is not the best frame of mind to be in should my doctors change their policy.
I developed CRPS following a right ankle surgery in 2012. I was 25 at the time. I enjoyed the outdoors, jogging, and walking my dog (now I have three). Prior to the surgery, I was told it would be minimally invasive and that life would go back to “normal.” That surgery changed my life.
I knew something was wrong right after the surgery. The pain was unbearable and every time I would go back to the doctor for a follow-up, I was brushed off and told that this was all part of the healing process. I knew in my gut that something was wrong. I tried all the measures that the doctor recommended and as a 25-year-old, my life was shattered. CRPS impacted my life more than cancer (diagnosed 2011). I chose to advocate for myself, changed doctors, and held on to hope. During the first initial years, I held on to an idea of “getting my life back.” I had two additional right ankle surgeries in 2013 and 2014 and one left foot surgery in 2016 (I developed plantar fasciitis). After all this, CRPS had still not been diagnosed.
By 2013 I had been diagnosed with fibromyalgia (which was initially undiagnosed CRPS). I also had multiple guided injections, PRP treatment, shockwave treatment, and a pain that started in my first ankle had spread throughout my body. I decided to move from New York City to North Carolina in hopes for improvement in my quality of life. In NC, I was finally diagnosed with CRPS and it all made sense. I learned to grieve my past life and accept my new identity. I learned to nourish this new part of me and use it as a tool. I also learned to listen; to listen to my body. Developing CRPS and the ongoing medical trauma that I endured changed my life. Thriving with CRPS has helped me change the lives of others and has given my life purpose. I decided to become a mental health therapist and specialize in chronic illness and trauma. My CRPS story has guided me to my calling. Being able to sit with someone’s physical and emotional pain while guiding them through their healing journey has been one of the most rewarding parts of my life.
What has daily life been like since your diagnosis?
Over the years I have learned to listen to my body’s messages. I now accept CRPS as part of my identity and try my best to be intentional about my daily life. I am no longer a “planner” as life and CRPS have taught me the beautiful lesson of living presently and mindfully. I do not judge myself for not being able to do daily life things and meet my body where it is at. Before my condition, I was an active 25-year-old caught up in all the things that “had to get done.” I am now 32 and enjoy living presently, am thankful for my life, and find gratitude even on the tough days.
What is one thing you wish those without CRPS/RSD could understand?
We are not looking for us to be “fixed” as CRPS is chronic and lifelong. Listening, sitting with our pain, and validation go a long way. It is also okay for you to get support for having a loved one with CRPS. This is hard for everyone.
What advice would you give to newly diagnosed Warriors?
Taking care of your whole self is essential. Your mind and body are connected. Listen to your body. Your body is your guide. Prioritize sleep, self-care, and your mental wellness. Learn your triggers. Advocate for yourself. Take your time learning as it can be overwhelming. Add loved ones to support groups too! That can provide them with a different perspective other than your own.
What advice would you give to Warriors who have had CRPS/RSD for many years?
CRPS is our unwelcomed guest. While we have not welcomed it into our lives, we can use our pain to connect with other people’s pain. We may be in constant physical and emotional pain and yet we bring so much value to this world. Explore your value and worth. Connect and share that worth with others.
What activities or treatments have helped you find temporary or long term relief?
Sleeping and rest is helpful. Therapy, mindfulness, and singing bowls help regulate my mind and body.
Anything else you would like to add?
It is okay to feel. It is part of your journey to ride the waves of emotions that come with CRPS. Feeling your emotions and your body will help you cope. You are not alone.
In 2009, I was at a concert to see my favorite band. I was downstairs and I heard the music start so I ran up the stairs in my flip flops. I stumbled and ended up falling backwards, landing on the step behind me, and hyperextending my big toe. While I was in a lot of pain in the days that followed, I heard from everyone that, “There is nothing you can do for a broken toe” and hoped it would heal on its own. It began to get worse and eventually I ended up in a walking boot, with instructions to ice it frequently for six weeks.
A flare in 2009
As weeks went by, the pain got increasingly worse and the symptoms got stranger. My entire foot rotated between a bright red, angry color and a pale, purple shade. I began to experience shooting pains up my leg and every inch of my foot began to feel the intense pain that RSD/CRPS patients know so well. After three months of boots, foot apparatuses and pleading with the doctor that, “This pain is not normal,” I was sent to a foot specialist. Instantly when he felt the ice cold temperature of my foot and saw the purple coloring, he diagnosed me with RSD.
I will never erase from my mind my first day of physical therapy. They started with desensitization and I remember crying in pain as the PT ran a Kleenex over my foot. Slowly, we worked our way up to a towel, sandpaper, massage, and beyond. Over the course of the next year it was a constant attempt to figure out something that would stop or slow the RSD’s progression. I did at least 12 nerve blocks, physical therapy, and was on a heavy load of medications. I had been an athlete all my life. I loved running more than anything and thrived on pushing myself to physical limits. Now, I could barely walk and could not even sleep under a sheet because of the sensitivity. I dreaded car rides, because the vibrations of the car brought me such intense pain. The pain eventually began to work its way up into my lower leg and into my other limb.
As my fellow RSD/CRPS sufferers know, this type of pain can not be fully explained. There is the reason why it is positioned at the top of all Pain Indexes. The most accurate description I have ever heard of RSD/CRPS is that, “Someone has set your veins on fire.” There is no relief and no real end in sight. It is physically and mentally exhausting. I was in my last year of graduate school and trying my best to juggle life as a newly diagnosed RSD patient while attempting to live a seemingly normal life on the outside.
In the summer of 2011, My husband and I got a huge surprise. We were going to be parents. Due to some issues in my medical history, doctors had always told me that my odds of having a child without fertility help were slim. As happily surprised as I was, my initial response to the pregnancy was fear. I had been on a prescribed cocktail of Lyrica, Savella, a clonidine patch, and several other medications. I had also recently had a nerve block and a DEXA scan, all of which are contraindicated in pregnancy. My fears for the baby were also coupled with fears for myself. If I was in this much pain with medication, how in the world could I function without them? What would the extra weight do? It was a complex series of emotions running through our family.
Shannon and Keith’s two daughters, Ally (age 7) and Cora (age 4)
My fears slowly eased, however, as my pain drastically improved throughout the pregnancy. Even though pain was still there, it was almost like getting to go back to the time before the awful disease had struck. I knew that the increased hormones were probably helping my cause and that more than likely the pain would return after pregnancy, but I was thankful for a few months of relief.
Our perfectly healthy daughter, Ally, was born on March 14th, 2012. And call it luck, hormones, or my own personal miracle, RSD pain returned, but in a much milder form. I know that all parents share unique bonds with their children, but I will forever be so thankful for the little one that brought me out of the dark shadows of this difficult disorder. Had the horrible pain from RSD continued, my life would still be overflowing with joy due to our amazing little girl. But something about carrying her allowed my foot to be healed, and for that I will always be grateful.
For the past eight years, I have continued to deal with RSD, although in a milder form than many of our RSD/CRPS Warriors. I do have pain everyday and I have to be very careful to take care of my foot. Something as simple as a blister, a stepped on Lego, or a falling can of tomatoes can send it into a flare that takes weeks or months to recover from. Cold weather is especially rough and keeping my feet warm during the winter season is vital.
Shannon and her husband, Keith, at Bonnaroo for the 15th time!
Although my RSD still presents me with challenges, it is not lost on me how lucky I am that my condition is where it is. There are thousands who suffer in pain daily and my heart breaks for each and every person that struggles and is diagnosed. To the newly diagnosed patient, my advice would be “Do not lose hope!” I am an example of a young person that actually improved over time, even when it all seemed hopeless. A quote that helped me through my most difficult days was from actor Michael J. Fox. When asked about his challenges with Parkinson’s disease, he responded, “I’ve accepted that this is my situation, but I’m not resigned that it has to be this way always.” Try and wake up everyday with the belief that today could be better than the day before.
To those RSD/CRPS Warriors actively struggling with this disease, thank you for sharing your stories. This community has helped so many people, regardless of the stage they are in, learn and grow in pursuit of better mental and physical health. The stories raise awareness; the awareness will one day hopefully bring us a cure.
To the caregivers and loved ones, Thank You. Watching someone you love in pain is excruciating. When a patient is diagnosed with RSD, everyone around them is affected. My husband, Keith, has been so good to me throughout this journey. I could not have tackled this road on my own.
To all my fellow RSD survivors (and you ARE a survivor if you have made it this far), please remember you are SEEN, you are LOVED, and you are NEVER alone. 🧡
How and when did you develop CRPS/RSD?
I turned 50 in January 2019. Fifty was supposed to be my year. I even did the SNL Sally O’Malley skit as a joke on my birthday. 
How and when did you develop CRPS/RSD? 
How and when did you develop CRPS/RSD? 
Hi there. This is a part of my CRPS story.
